This has taken a lot of courage to write this, but I’ve decided the journey that I have been through this year and the road that I have been forced to follow has taught my family and I some lessons along the way that I need to share.
There is not a lot of knowledge out there surrounding brain injuries, and the effect on your day to day life, nor is there the right support unless you go looking for it, as I had to do.
If I can spread more awareness of brain injuries and use the experiences that I’ve been faced with to try and help others, especially people going through the same challenges as myself then it will help to make this a worthwhile journey.
I count myself lucky that I’ve been given this second chance in life. It’s a miracle with the injury I faced that I’m sat here writing this to you, but I have to say just because I look exactly the same as I did pre fall doesn’t mean I am the same person.
My body doesn’t match my head. I stare in the mirror and the same person staring back isn’t the girl I used to know.
A year ago today, September 19th, my life as I knew it changed forever. I was in Dublin, Ireland on what was meant to be a romantic weekend away; instead, I was in ICU fighting for my life, unaware of my accident and the trauma that had occurred I had sustained a fractured skull and a bleed on the brain.
I have no memory of the accident; I feel I’ve made a picture story in my head from what others have told me. What I do remember, is having breakfast with my husband and not feeling 100% so made my way to the toilet and towards some stairs that couldn’t have been more than 100yards, if that, from our table.
The next moment I’m waking up 3 days later in HDU in what can only be described as an out-of-body experience, having nurses and doctors surrounding my bed. At this moment I was unaware of my accident, I was unaware of the accident for many weeks. I just knew my loved ones surrounded me and it was only until I was handed a white board, to be told I couldn’t talk. I can still hear the words of my mum crying, “I can’t understand what you’re saying.”
Imagine being 27/28 years old and trying to relearn everything you would have as 1+ year old. I couldn’t even remember how to spell my name or what street I lived in. I had to learn to talk, walk, read, write, you name it I had to re learn it.
I can honestly say looking back to where I was a year ago, to where I am today WOW and I mean wow it’s an amazing achievement and every day is a massive milestone for me. However, just because those massive steps have been taken and I’m no longer an inpatient, I am still an outpatient who still has several hours a week of intense rehab to get me to where I was before pre fall.
I get judged every day for how I look, you can see from the before and after photos I look no different. I didn’t fall and break my nose, my leg or have scars you can physically see, I’ve caused damage to my frontal lobe and temporal lobe, a part of me that you will never see.
I’m not saying that’s a bad thing that you can’t see my injury, all I am saying it’s difficult for people to comprehend just how debilitating a brain injury can be. I’ve been told i’ll never come off medication. It takes two years for your brain to recover from the brain damage that was caused by the accident. Basically my brain no longer uses the m4, I now use every A road to get me to my main goal and that causes huge physical fatigue it’s exhausting. Every day I have to get up and I tackle the day because it’s only myself fighting this fight and I will get there, it just takes time, they say time is the healer in all aspects.
I’m still grieving the girl who I was for the last 27 years and trying my hardest to accept the new girl who is one year old today. Only those close to me will see my daily struggles and I’m so thankful for those who stand by me and help me through the bad times, they also give me the best encouragement to keep striving towards my goals.
I honestly believe everyone has a different outlook on life, and if you know me you know I will do anything I can to achieve or get to where I want to be. There is a difference when you’re telling someone who is fighting daily with coming to terms with an injury that has taken over his or her life to be positive.
I have lost my confidence and parts of my personality have completely changed, but it’s all about learning how to adapt. People’s judgements have been the worst; I’ve been in countless number of coffee shops, restaurants’ or even cinemas where I’ve been mimicked by how I now talk (I have a stammer). Judged because I use a walking stick (and I have to say I have the best pimped out walking stick going.) Or even parking in a disabled spot and having people hurl abuse through the window at me ‘She shouldn’t be here – she doesn’t look disabled.’ Having a hidden disability can be very frustrating. Why? I ask myself this every day, because on the outside I paint this picture of a girl who used to be here, I dress well and make an effort with makeup so to everyone else “I look amazing.” The words I dread to hear, purely because the outside doesn’t match this inside, if I could walk around with a plaster cast on my head do you think you would judge me differently? This is soul destroying. We are now living in a society where it seems acceptable for people to make remarks and judge others before understanding the complete story. Granted we’ve all laughed at someone walking out of a toilet with tissue paper stuck to the bottom of their shoes, but when this comes to people’s health and wellbeing – this isn’t acceptable.
When I was discharged from hospital in the space of three months, I was mourning someone I once was, the life I lived, my marriage breaking down and the loss of my Bampy. My Bampy- anyone who does know me, knows that he was the main man in my life. Two weeks after I was discharged from hospital, he had a stroke affecting the same side of his brain as my injury. In my own little world, I thought me and him would battle through this together. I joked with him at having speech therapy together and even brought us a puppy. I blamed myself massively for his stroke. Law of attraction – you put it out there, it will come back to you, when I had my injury he said “it should have been him.” I haven’t come to terms with him not being here, I’m still waiting for him to come home. In my own way everything had a box. My injury, my Bampy and my marriage. I think it’s fair to say that coping with one of those life altering events would be difficult for anyone, I had to deal with all of it, all at once. It’s been the toughest battle I will ever face.
Acceptance is one of the hardest parts of my recovery. If someone could have told me leaving hospital and the transition into what would be my ‘new normal’ would be harder than the actual hospitalization and the rehab I had in those months I am not sure I would have believed them.
I’d like to think I could have coped better over the year; I was so desperate to try to be who I once was, having my hair done, and buying endless amounts of mac lipsticks. Trying to keep up with my social groups I was ignoring the big elephant in the room, the one trying to tell me you’re not you, you need to address this and understand what the changes have been.
I’ve lost my taste buds, my sense of smell, my emotions, my lack of understanding, the ability to process a daily task, i struggle with attention, my memory, my fatigue and one big part of my speech and language control. I have zero filter, I swear more now than I ever did, my mood swings are horrific, I hate noise, I’m so sensitive I can’t block out other people’s conversations or listening to high pitch sound (like babies crying). The worst part is I don’t even know I’m doing any of these things; I’m only faced with reality when it’s pointed out to me. I understand that I can’t taste food; I eat purely because I have too, I’ve been days without food because I’ve forgotten about it I have zero interest in it. My main hobby pre fall was baking I loved it! I had a garage full of cake bits, I used to prefer shopping for cake bits rather than clothes. Now I couldn’t think of anything worse I have zero interest in it. Why? Is it because it’s part of my interest in food who knows I just know that it’s a different me.
I worry that I will never feel that “love” feeling again I know that I loved my family members’ and that I was in love with my husband but how can I feel love again, will I ever understand what feelings are what? I don’t have that excitement ‘feeling’, if someone told me they were flying me to New York tomorrow I wouldn’t be phased by it, it makes me sound ungrateful but I just don’t have the ability to ‘feel’ that happy feeling I once did. I would worry more about my lack of sleep.
I don’t cope well with pressure; I can’t take too much information in and process it. I know my rehab now is helping me come to terms with everything that has happened. I am scared that I will look back in a year’s time and feel that my brain injury was my soul focus, and my soul focus was to try to get better. I couldn’t give anything else a chance when I was fighting for me, and now I’ve lost a lot from my life in the process.
Headway saved me.
It gave me a new lease of life, when I rang them in March crying because I didn’t know what was happening to me they introduced me to two social groups. The first on a Tuesday morning called pedal power, adapted bikes for all disabilities to help with your physical rehab and also a good laugh with friends’, the second, Thursday afternoons in Chapter for a social coffee group. The first time I went was a Thursday (and this happens every time either in hospital, doctors meetings or even while at this group I cry) I feel I’m accepted, they understand how I feel. I don’t have to explain myself, why it’s so hard to walk one day or how one day my speech is better than the other, or the simple fact I’m so scared of stairs can you blame me? They completely get it because they are going through the exact same as I am. I’ve made some real life time friends at headway and it’s all thanks to them and my “brainy friends” that I’m here and it has helped me as a person.
My TBI rehab only started properly in May where I’m at hospital for 3 days a week working on my physio, speech, occupational therapy and neuropsychiatry. Other than meeting people in headway I went for 6 months without any help trying to figure out “the new me” that’s a long time transitioning into normality. This explains a lot why I couldn’t communicate or express how I was feeling. Normally when you leave hospital you are under “the brain injury community team” which help you at home but due to moving hospital and different referrals I wasn’t on this list, but now I am in the best place possible for me now. Even though it has taken a long time, the only way I will get better is by continuing with the help I’m getting now. Even if there are times when my mum is dragging me there.
I’m so lucky I get a lot of help from Benny Matthew at “Cardiff Bay Chiropractics”. Compared to who I was when I was discharged to now, I know there’s a massive difference. They manage to make me stand without falling over, I couldn’t even turn over in bed without feeling dizzy. They help me reduce my daily headaches and relieve a lot of pain I suffer with due to the accident, honestly their support is unbelievable. I’m forever grateful to them!!
There have been times where I wanted to give it all up. Where I just couldn’t understand when I felt I couldn’t get any lower and all of a sudden I hit rock bottom again. I was out of control, in a spiral and I am the worst for self-destruct. I just didn’t think I could be strong anymore; the only way I saw out was to no longer feel any more pain. I had to realise that I wasn’t on my own, yes I find rehab at hospital hard work and draining but it’s because of that help Im able to now understand what is happening to my brain.
I have the best family around me, I have the best friends supporting me and just because my life is now built around medication, hospital and rehab it doesn’t mean that my life has to stop. I will one day be back driving. I will one day be back at work and I will one day manage my fatigue and mood swings. But right now I’ve come so far in the small amount of time just wait until next year I will be a better version of myself and be loved for who I am not what I was.
I will do all I can to help others suffering from a severe traumatic brain injury and help them realise that it’s all about time and there’s no magic wand to fix it, it’s about adjusting and accepting. I know I still have a long way until I fully accept what I’ve been through. Along with the other situations I’ve been faced with in my recovery period and hopefully when I reach that point, I will give myself a pat on the back. As for now it’s one step and one day at a time.